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I am most grateful to Patrick Griffin for sending me the following
letter in response to The Social
Internet. It validates a lot of my thoughts about the study and
points to the power of the internet in health research and community
creation.
Hello Dan,
I read with much interest your review of Stanford's "research,"
The Social Internet. I am a graduate
student in Adult Education, with an emphasis on Web based training, and
particularly on user-centered site design. I am also disabled, and the
author of the Kennedy Disease (KD) Web site, found at <http://www.geocities.com/~kd-sbma/>.
Kennedy's Disease (KD), named after the neurologist who identified
it as a separate disorder with a genetic origin, is also termed spinal
and bulbar muscular atrophy (SBMA). It is an X-linked inherited
neuromuscular disease that afflicts men, usually when they are 30 to 50
years old. It is similar to Lou Gehrig's Disease (or ALS) in symptoms,
but it is more slowly progressive. It is definitively diagnosed by the
use of DNA analysis to determine the length of a particular
trinucleotide repeats in the androgen receptor gene. It is not entirely
understood, has no specific treatment, and has no cure.
I have studied research methodology and its applicability using
email and Web sampling. Your comments about the sample selection
apparent in this study were on target. Making generalizations about a
population based on a non-random sample (therefore non-representative
of the population) is a significant flaw in any research. It appears
that this study made that error; thus its findings are suspect at
best.
I have also studied community development, also from a Web
perspective. I found it interesting that the study ignored the use of
the Internet as a means to find health or medical information. In my
experience, that is a major use, especially for those afflicted with
chronic health problems or rare diseases for which there is no cure,
such as ALS or KD. I found the following comments astute:
What's interesting is that the top use of the Internet, email, is
most definitely a form of social interaction, as are using the phone,
regular mail, or meeting in physical space. In fact, I've found email a
great way to create new communities of people with similar interests
regardless of physical proximity. Rather than isolating me, email has
made me part of several communities, allowing me to interact with
thousands of Internet users around the world on a regular basis. Yet
the study states the Internet isolates users.
From my standpoint, which is supported by other research, Web
access, and particularly email, increasingly promotes social
interaction in certain segments of society. In my case, those with
rare diseases can share experiences with others throughout the country,
and the world. KD is extremely rare, and without the Internet I would
probably never have met another so afflicted. The Internet has allowed
the formation of a virtual KD community and has certainly made me feel
less isolated.
For those with physical disabilities, mobility is often a serious
challenge. Again, the Internet allows one to travel without leaving
home, and able to see, learn, and communicate in ways available only to
those who are able-bodied. Finally, older persons are increasingly
becoming a Web presence. The frail elderly gain in ways similar to
those who are physically disabled. Others use email to communicate with
dispersed friends and family members, thus maintaining both strong
social ties and a feeling of belonging.
I support research on the use of the Internet. However, the research
must be put to the same scrutiny and peer review of any other research,
before it is publicized. As Americans are increasingly attuned to
"sound-bite reporting," the terms "shown by research" can give the
mistaken appearance of validity and sway otherwise reasonable people to
make errant conclusions. Institutions of higher learning must develop
and enforce proper research methodologies for using Internet based
data.
Further Reading
Loneliness
and the Internet, Jakob Nielsen's Alertbox, Useit.com, 2/20/2000.
"Why is the telephone considered a superior form of social contact
relative to the Internet...?"
Dan Knight has been using Macs since 1986,
sold Macs for several years, supported them for many more years, and
has been publishing Low End Mac since April 1997. If you find Dan's articles helpful, please consider making a donation to his tip jar.
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